Dataset Information

Extending the Minimum Information About BIobank Data Sharing Terminology to Describe Samples, Sample Donors, and Events.

ABSTRACT: Introduction: The Minimum Information About BIobank data Sharing (MIABIS) was initiated in 2012. MIABIS aims to create a common biobank terminology to facilitate data sharing in biobanks and sample collections. The MIABIS Core terminology consists of three components describing biobanks, sample collections, and studies, in which information on samples and sample donors is provided at aggregated form. However, there is also a need to describe samples and sample donors at an individual level to allow more elaborate queries on available biobank samples and data. Therefore the MIABIS terminology has now been extended with components describing samples and sample donors at an individual level. Materials and Methods: The components were defined according to specific scope and use cases by a large group of experts, and through several cycles of reviews, according to the new MIABIS governance model of BBMRI-ERIC (Biobanking and Biomolecular Resources Research Infrastructure-European Research Infrastructure Consortium). The guiding principles applied in developing these components included the following terms: model should consider only samples of human origin, model should be applicable to all types of samples and all sample donors, and model should describe the current status of samples stored in a given biobank. Results: A minimal set of standard attributes for defining samples and sample donors is presented here. We added an "event" component to describe attributes that are not directly describing samples or sample donors but are tightly related to them. To better utilize the generic data model, we suggest a procedure by which interoperability can be promoted, using specific MIABIS profiles. Discussion: The MIABIS sample and donor component extensions and the new generic data model complement the existing MIABIS Core 2.0 components, and substantially increase the potential usability of this terminology for better describing biobank samples and sample donors. They also support the use of individual level data about samples and sample donors to obtain accurate and detailed biobank availability queries.

SUBMITTER: Eklund N

PROVIDER: S-EPMC7310316 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Extending the Minimum Information About BIobank Data Sharing Terminology to Describe Samples, Sample Donors, and Events.

Eklund Niina N Andrianarisoa Ny Haingo NH van Enckevort Esther E Anton Gabriele G Debucquoy Annelies A Müller Heimo H Zaharenko Linda L Engels Cäcilia C Ebert Lars L Neumann Michael M Geeraert Joachim J T'Joen Veronique V Demski Hans H Caboux Élodie É Proynova Rumyana R Parodi Barbara B Mate Sebastian S van Iperen Erik E Merino-Martinez Roxana R Quinlan Philip R PR Holub Petr P Silander Kaisa K

Biopreservation and biobanking 20200417 3

<b><i>Introduction:</i></b> The Minimum Information About BIobank data Sharing (MIABIS) was initiated in 2012. MIABIS aims to create a common biobank terminology to facilitate data sharing in biobanks and sample collections. The MIABIS Core terminology consists of three components describing biobanks, sample collections, and studies, in which information on samples and sample donors is provided at aggregated form. However, there is also a need to describe samples and sample donors at an individu ...[more]

PMID: 32302498

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Project description:UnlabelledBackgroundTypically a large amount of information is collected during healthcare research and this information needs to be organised in a way that will make it manageable and to facilitate clear reporting. The Chiropractic Observation and Analysis STudy (COAST) was a cross sectional observational study that described the clinical practices of chiropractors in Victoria, Australia. To code chiropractic encounters COAST used the International Classification of Primary Care (ICPC-2) with the PLUS general practice clinical terminology to code chiropractic encounters. This paper describes the process by which a chiropractic-profession specific terminology was developed for use in research by expanding the current ICPC-2 PLUS system.MethodsThe coder referred to the ICPC-2 PLUS system when coding chiropractor recorded encounter details (reasons for encounter, diagnoses/problems and processes of care). The coder used rules and conventions supplied by the Family Medicine Research Unit at the University of Sydney, the developers of the PLUS system. New chiropractic specific terms and codes were created when a relevant term was not available in ICPC-2 PLUS.ResultsInformation was collected from 52 chiropractors who documented 4,464 chiropractor-patient encounters. During the study, 6,225 reasons for encounter and 6,491 diagnoses/problems were documented, coded and analysed; 169 new chiropractic specific terms were added to the ICPC-2 PLUS terminology list. Most new terms were allocated to diagnoses/problems, with reasons for encounter generally well covered in the original ICPC 2 PLUS terminology: 3,074 of the 6,491 (47%) diagnoses/problems and 274 of the 6,225 (4%) reasons for encounter recorded during encounters were coded to a new term. Twenty nine new terms (17%) represented chiropractic processes of care.ConclusionWhile existing ICPC-2 PLUS terminology could not fully represent chiropractic practice, adding terms specific to chiropractic enabled coding of a large number of chiropractic encounters at the desired level. Further, the new system attempted to record the diversity among chiropractic encounters while enabling generalisation for reporting where required. COAST is ongoing, and as such, any further encounters received from chiropractors will enable addition and refinement of ICPC-2 PLUS (Chiro). More research is needed into the diagnosis/problem descriptions used by chiropractors.

Dataset Information

Extending the Minimum Information About BIobank Data Sharing Terminology to Describe Samples, Sample Donors, and Events.

Publications

Extending the Minimum Information About BIobank Data Sharing Terminology to Describe Samples, Sample Donors, and Events.

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